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2 This thesis has been prepared by the Department of Primary and Community Care of the Radboud University Medical Centre Nijmegen, the Netherlands, within the Program of Women Studies Medicine. The Department of Primary and Community Care participates in the Netherlands School of Primary Care Research (CaRe), which has been acknowledged by the Royal Netherlands Academy of Arts and Sciences (KNAW) in Layout: Twanny Jeijsman Cover photography: Carla Leijen en Lotte Gerritsma Cover design: Esther Beekman, Print: Ipskamp, Enschede ISBN: Copyright 2011, M.A. Schoevers

8 GENERAL INTRODUCTION I swear by Apollo the healer, Asclepius, Hygieia and Panacea and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath and agreement.. The right to health care is a human right recognized by the UN international covenant on Economic, Social and Cultural rights. 1 States are under the obligation to provide equal access to preventive, curative and palliative health services for all persons, including undocumented immigrants. 2 In theory this may be true but in practice undocumented immigrants cannot always claim this right. Undocumented immigrants have a marginalized position in our society. They cannot speak up for themselves. Since they have no permission to stay in the host country and live in permanent fear of being reported to the authorities, they will not easily report complaints and problems they experienced when claiming their right to health care. Undocumented women are supposed to be even more marginalized. Since they often live in dependence of male partners or employers it is even more difficult for them to speak up. In order to guarantee the right to health care, undocumented women should be given a clear and loud voice. That is the main relevance of our study. A woman without residence permit in the consultation room Saida L, 30 years, makes her first visit to a General Practitioner (GP) since she became undocumented in the Netherlands. Nine years before she arrived in the country after an arranged marriage. Saida s country of origin is M, were she grew up in a small traditional village in the mountains. Because of her marriage with a legal resident, she obtained a residence permit. Already in the first month of her marriage she was forced into prostitution by her spouse. She was unable to speak Dutch or English and was kept in captivity by her husband. Introduction 8

9 After 2 years she gave birth to a girl. She escaped with her daughter from her husband after she was forced again into prostitution shortly after the delivery. Unfortunately this occurred one month before she would have obtained a permanent residence permit. Saida became illegal. Saida is without residence permit for 7 years now. After her escape she received shelter for short periods from different friends or acquaintances. Sometimes she had to stay a few days on the street. She was continuously afraid to be arrested by the police. She did not consider going back to M., because of her divorce. She would become a social outcast in her village without income and respectability. Saida perceives her health as poor. She experiences several health problems. She is tired and listless for some years already. She suffers daily from headaches. Yet her most important concerns are about the health and development of her daughter. Since two weeks Saida suffers from increasing lower abdominal pains. Intercourse is painful and she notices that her vaginal discharge changed colour. HEALTH STATUS There are approximately 75, ,000 immigrants without legal status living in the Netherlands; 25,000-50,000 of them female. 3 This population constitutes one of the most excluded and vulnerable social groups in our society. They lack good housing and working conditions, live in poverty, isolation and in the permanent threat of being arrested by the police. Furthermore they have experienced difficult circumstances in their country of origin: war, violence, famine, poverty, natural disasters and human rights violations. Women in this category are even more vulnerable in their position of dependency of male persons (marriage, family reunion, wife of a political refugee, human trafficking) and to gender based violence in particular. 4 It is reasonable to expect that these conditions have a negative effect on their health status. Introduction 9

10 On the other hand some studies show that recently migrated legal immigrants report better health in comparison to the regular host country population. 5-7 This phenomenon, known as the healthy migrant effect, is attributed to the various selection processes that immigrants undergo before arriving at their destination. Since most people go to another country expecting to work, those who migrate are most frequently the fittest and best able to survive the journey. For undocumented immigrants this might apply even more strongly as the journey without documents and the expected living conditions as undocumented in the host country are even tougher than for legal immigrants. 8 We are curious if this assumption is correct and if this presumed better health continues if people have to live as an illegal resident in the Netherlands. Legal immigrants rate their health worse than autochthonous people in the Netherlands 9 and both physical and mental health problems are highly prevalent among asylum seekers and refugees. 10 Studies among undocumented women are scarce and include only women that have been able to make contact with health services or welfare support services We found no information about the health status and health problems of the invisible women who are not in contact with health care facilities. Furthermore, in most studies data on health and health problems of undocumented immigrants were obtained from health care professionals and not directly from undocumented women themselves. These studies provide information about health problems of undocumented immigrants presented to the doctor, not about all the health problems perceived by the women. Hidden problems, e.g. vaginal discharge can certainly influence health status and are therefore important to register. So, research based information on the health status and the specific health problems of undocumented women is lacking. For clinicians it is important to have this information in order to provide adequate care. Therefore we decided to Introduction 10

11 explore the health status and specific health problems of undocumented women in the Netherlands. SEXUAL AND REPRODUCTIVE HEALTH Problems with sexual and reproductive health often have serious consequences for the wellbeing and health of women and their families. The definition of health by the WHO implies for reproductive health that people are able to have a responsible, satisfying and safe sex life and the freedom to decide if, when and how often to reproduce. 19 According to article 12 of the United Nations international bill of rights for women, states shall ensure to women appropriate services in connection with family planning, pregnancy, confinement and the post-natal period. 20 On basis of their marginalized position in society we have reason to believe that the sexual and reproductive health status of undocumented women is under pressure. Many women experienced physical assault or sexual violence in their past and live in dependency of men. 20;21 The Population Action (2007) stated that the Netherlands is one of the safest countries for women s sexual and reproductive health. 22 This does not fully apply to immigrant women in the Netherlands. For example maternal death among asylum seekers is 4 times higher than for autochthonous women. 23 Further there is a rising incidence of abortions, Sexually Transmitted Diseases (STDs) and the risk of maternal death among immigrants. 18;24;25 Female immigrants in other western countries face problems with sexual and reproductive health as well. Refugees in the EU suffer from higher maternal morbidity and mortality, experience inferior pregnancy outcomes, have less access to SRH services including family planning and safe abortion services, report higher levels of HIV and other sexually transmitted infections (STIs), and are more likely to become victims of gender-based sexual violence. 21;29 Many Introduction 11

12 may also suffer from post-traumatic stress disorder due to sexual assault and violence. 30 We know from studies amongst undocumented immigrants visiting a health facility in Geneva that they were more exposed to violence during pregnancy 14 and that the majority of the pregnancies was unintended. 14;15 All these studies however report results of women that were able to make contact with health facilities. No research based information is available about the sexual and reproductive health of undocumented women in the Netherlands. Therefore, we wish to investigate reproductive and sexual health needs of undocumented women in the Netherlands. HEALTH CARE UTILISATION Shortly after her escape from her husband Saida consulted the GP she used to visit when she still lived with her husband. This GP told her that she had to pay cash for the consultation because she was no longer insured. After that she never went back to him again. In the following 6-7 years she never visited a health care institution again despite several health problems. Friends told her that the doctors might call the police. She managed to obtain medication for her child through faked prescriptions for a child of friends. Recently she was advised by a friend to approach a voluntary support organization about her housing situation. This organization helped her to find temporary residence in a shelter home. While in this shelter home she developed increasing abdominal pains. After a few days volunteers from the shelter home arranged an appointment for her with a GP. In the Netherlands, all regular residents are obliged to accept health insurance, but in 1998 a new law insurance. 31 prohibits undocumented immigrants to obtain this Simultaneously the Dutch government aims at equal access to Introduction 12

13 health care. 32 Undocumented immigrants are entitled to receive all medically necessary care, that should be defined as responsible and appropriate medical care as indicated by the treating doctor, 32 Introduction 13 whether or not they are able to bear the costs of the medical treatment themselves. During our study, before January 2009, a special fund reimbursed health care providers if the undocumented immigrant was insolvent. GP s, midwives and pharmacists could obtain a 100% reimbursement. Hospitals and mental care institutions were initially obliged to cover unmet costs out of their own resources. Today, reimbursement for general practice is available for up to 80% of the costs. Reimbursement for hospital care is now also possible. However, the reimbursement of hospital care and pharmaceutical care are restricted to designated institutions. Costs for pregnancy care are fully covered. 33 Although access to health care is guaranteed in theory, no information is available what the effect of these legislations is in practice. Health seeking behaviour and access to health care are influenced by more and other factors than legal and financial In several publications, researchers, professionals and organizations expressed concern about the accessibility of health care services for undocumented immigrants in western countries. 14;15;37-57 These publications mention limited or short entitlements, complicated administrative procedures, discrimination by and ignorance of health care workers, lack of information and financial means and permanent fear of being denounced. Only one publication regarding Spain, where in 2002 legal changes provided access to free medical care for undocumented immigrants in similar terms as the Spanish population, concluded that there was no difference in access to health facilities between documented and undocumented persons. 58 The vast majority of the publications are opinion papers, overviews, commentaries or editorials. 38;39;42;44;48;50-53;55;57;59 There were some studies that indicated obstacles in accessing care by interviewing health care professionals or relevant representatives in the field. 41;43;47;49;54 In only three studies

14 undocumented immigrants were interviewed in person. 14;15;37 The studies that interviewed undocumented immigrants in person included only persons that had been able to make contact with health care institutions or support organizations. At the time of this study we only knew of one study in the United States that also included undocumented immigrants that could not make contact with health care institutions. 56 Apart from a few studies concerning antenatal care, 12;14-16 we found no studies about general health care utilization and the problems in accessing care for undocumented women. Because of the insufficient information about the actual use of health care facilities by undocumented women and about obstacles they experience in accessing health care, we decided to explore these subjects with inclusion of women that are not known by health care professionals or voluntary support organizations. PATIENT-HELD RECORDS Saida followed a Dutch language class in the past 5 years, but communication is still difficult. Saida feels a sense of shame to seek help for her gynaecological symptoms. She mentions abdominal pain to the GP but she conceals abnormal discharge and painful intercourse. The GP notices a large scar on the abdominal skin. Saida explains that she had surgery 8 years ago in Amsterdam, but she cannot explain the reason why. Medical record information is not available. The GP feels uncertain and decides to refer her for an ultrasound and laboratory tests. Physicians experience serious problems to provide undocumented immigrants with proper care as a result of communication problems, complexity of morbidity and extra workload. 38;60 Furthermore lack of adequate medical record information is a problem. Undocumented immigrants visit different physicians at different places and are often not registered on a permanent basis. Therefore, Introduction 14

15 past and actual record information are often not available. 61 As a consequence continuity of care for undocumented immigrants is critical. This probably influences the quality and costs of care. 62;63 Knowledge of a patient s medical history is a substantial contributor in saving time, referrals and reduction of the use of medication. 64 Moreover it improves health outcomes. 65 In the Netherlands nearly all inhabitants are registered with a GP; the GP administers all first line care, functions as a gatekeeper to specialist care and coordinates other health services when needed. Also undocumented immigrants are supposed to visit a GP for health care problems. Lacking medical record information therefore is a problem in particular for GP s. A computer-based record system is in most cases not feasible for undocumented immigrants since they frequently change residence. Further, the confidentiality of personal and medical information pertaining individuals in this group is of paramount importance. In theory, patient-held records might be a solution for this problem and can be valuable for many physicians all over the world. A patient-held medical record (PHR) will probably enhance the continuity of care as well as the empowerment of patients. In the Netherlands Médecins du Monde has recently started issuing PHR s for undocumented immigrants. However, the uncertainty of the appropriateness of a PHR for undocumented immigrants is considerable because studies about the use of PHR by undocumented immigrants are lacking. Therefore we wish to investigate the suitability of a patient-held record for undocumented immigrants. AIMS OF THE THESIS Against the background as described above the following study aims were formulated: Introduction 15

16 - To gain insight into the health status of undocumented women in the Netherlands and into the specific somatic and psychosocial health problems they experience. - To assess which reproductive health problems and needs exist among undocumented immigrant women and explore if they are able to fulfil these needs. - To explore health care utilization data and obstacles that influence health care utilization of undocumented women. - To explore the suitability of a patient-held record for undocumented immigrants. METHODOLOGICAL AND ETHICAL CONSIDERATIONS AND LIMITATIONS Undocumented patients are very difficult to recruit since they live in permanent threat of being arrested by the police and therefore try to hide. As a consequence the scarce studies that were executed interviewing these persons included only people that have been able to make contact with health care facilities or support organizations. Exploring views and experiences of undocumented women themselves, including the invisible women, is necessary to get insight in their health status, healthcare utilization and obstacles in accessing health care. The EU project Health care in Nowhere land states that this uncertainty/ignorance and invisibility are in a way functional for sustainability of practice. Conducting research among undocumented immigrants is conducting research in a vulnerable space. 66;67 Research amongst undocumented women, especially when including women that are not in contact with health care institutions or support organizations, has methodological consequences. Systematic recruitment through health care institutions, e.g. a GP, as common in health surveys, is not possible. Because undocumented women are nowhere systematically registered, gathering a statistically sound representative sample is not possible. The size of different Introduction 16

17 groups of undocumented women in the Netherlands can only be estimated. 3 Including undocumented women that are not in contact with health care institutions or voluntary support organizations means that recruitment must take place through unusual channels and requires careful considerations. Recruiting participants in this way is time-consuming and very difficult. Potential participants are afraid for immigration authorities and try to hide. After contact is established their trust should be gained and their safety should be guaranteed. For this vulnerable population informed consent is particularly important. Because many women are illiterate, afraid and reluctant to sign any paper, the Nijmegen University Ethical Committee allowed us to obtain the necessary informed consent for the study orally. We made a lot of effort to explain the study in two or three different occasions. We did this orally and we used written information that we had available in 8 different languages (Appendix 1). We asked the participants twice if they agreed to participate in the study. The exploration of patterns of health seeking behaviour, influencing factors and perceived barriers, should preferably be performed by in-depth interviews conducted in the women s own language by somebody of her own culture. Unfortunately, because of the large diversity in origin this approach was not feasible in our study. This has consequences for the richness of the qualitative data. Because the group of undocumented women consists of women of very different origin and cultural background, systematically measuring health in this group is complicated. Communication problems are common. Standard questionnaires, like SF 36, are not validated in so many languages. In most literature concerning regular immigrants, health status is measured by self-perceived health, chronic conditions and health complaints, sometimes completed with results of a health questionnaire. 5;6;9;10;68 Because this is a valid and feasible manner of measuring health, also among minority populations, Introduction 17 we decided to measure health status in our study population by perceived health, the number of chronic

18 conditions and health complaints. Extensive physical examinations are often burdensome and can discourage participation in the study. Therefore we decided to do a rather small physical examination including blood pressure, pulse, length, and weight, global examination of head, neck, chest, abdomen en extremities and HB. Results of the physical examination were mentioned in the PHR. Abnormalities were reported in a letter to the GP. For several reasons obtaining a direct answer on the question if undocumented women have control over their sexual and reproductive health is very difficult. This requires real in-depth interviews and these are, as we stated before, not feasible in this patient group. Therefore we decided to explore exposure to violence, use of family planning methods and abortion figures as they give an indication of control over their sexual and reproductive health. Finally, research in this vulnerable group obviously requires careful ethical questions and considerations. Identifying women that were not able to contact health care facilities ensures that the researchers become involved in the participants health seeking behaviour. It is unethical to interview these women about barriers in accessing health care and not help them access this care. Therefore we provided them with a medical advice and assistance in finding a GP. STUDY DESIGN We decided to conduct an exploratory study, including undocumented women with a maximum variety in socio demographic factors. Undocumented women 18 years were purposively recruited through churches, (voluntary) support organisations, General Practitioners (GP s) and midwives. To find women not yet identified by health professionals or an organisation, advertisements were placed in local newspapers and recruiting posters were placed in locations frequented by immigrants. Further we made use of snowball sampling: we asked participants with whom contact had been established to refer us to other females Introduction 18

19 who could potentially participate. We aimed to interview a group of 100 women, striving for maximal diversity. Diversity was sought according to age, country of origin and reason for being undocumented. After successfully including 80 women in four different cities in the Netherlands, we evaluated the composition of the study population and actively sought for women that were underrepresented in the study population: undocumented labour immigrants and victims of human trafficking. The undocumented women that showed interest to participate in our study were given an explanatory letter in their own language. If necessary instructed mediators from e.g. support organizations provided oral explanation of the study. If women were interested to participate contact was established with the research assistant. She further clarified the purpose of the study to the women or to a relative. If the women agreed to participate an appointment for an interview was made. The interviews were held in different locations: public and primary health institutions, a shelter home, a nursing home and occasionally in the women s temporary shelter. These locations were kept secret, also for mediators. To provide a nuanced and comprehensive understanding of the (reproductive) health problems and needs of undocumented female immigrants, their obstacles in accessing health care facilities and the acceptability of a patient held record, we applied different methods; structured interviews, semi-structured interviews and focus group discussions. Both undocumented women and their GP s were interviewed. An overview of the research activities is provided in figure 1. Between January 2007 and September 2008 one-hundred women were interviewed. The first session consisted of 4 separate parts; first a consultation with the GP about health problems, medical history taking and physical examination, next an interview with the research assistant about health care Introduction 19

21 utilization, followed by provision of a medical advice and the PHR. Finally, the provision of information about the Dutch health care system, the PHR and provision of an address of a GP if women were not yet registered. These parts were handled successively on the same day. This was efficient and resulted in minimal inconvenience for the participants and maximal participation. In the first part health problems were first assessed by a GP using an open-ended question, Which health problems do you experience at this moment? We then provided the participants with a list of common health problems, reproductive problems and obstetric problems and a concise list of chronic diseases. (Appendix 2) General perceptions of health were evaluated through a single item question on self-rated health: In general, would you say your health is excellent, very good, good, moderate or bad? Finally history taking and a concise medical examination including blood pressure, pulse, weight, length, examination of head, chest, abdomen and extremities and HB, took place. Socio-demographic information was obtained at the start of the second part and included data about country of birth, marital status, children, housing conditions, occupation, education, duration of residence in the Netherlands and reason for staying in the Netherlands. Data about use of health care services were obtained through a structured questionnaire. In order to explore obstacles experienced in accessing health care, semi-structured questions were asked. The interview contained the following themes: reasons for not-using health care facilities and obstacles encountered in accessing facilities. Preferably the women were interviewed alone in both the first and the second part. However, when a woman insisted on the presence of a partner or a friend, this was not refused. To women that were unable to communicate in English or Dutch interpretation was offered. The participants were informed that their answers would be processed anonymously. Given the fact that it was very difficult to gain the trust of the women since many of them were afraid of being arrested by the police, we did not to audiotape the interviews. Introduction 21

22 During the third part participants were provided with a PHR and a medical advice by the GP. Medical and personal data were entered in the PHR. The purpose of collecting these data was to favour the women. The PHR used in the study was developed by an expert panel and was designed for adult undocumented immigrants. (Appendix 3) Introduction 22 It was designed for use by one individual only. An A5 size, soft, covered booklet in a transparent cover provided space to insert additional leaflets, test results, and appointment cards. It contained separate sections for personal details, medical history, chronic diseases, medications, and allergies. Space was created for free text entries by health professionals, details of earlier pregnancies, results from blood tests, and useful addresses and telephone numbers. In part four, participants received information about the Dutch health care system through a DVD that we had available in 21 languages. Further they received a folder about the Dutch health care system that we developed for this specific group in 7 languages (Appendix 4) and an address and telephone number of a GP close to their place of residence who was willing to register undocumented patients. After 3-4 months, the research assistant approached the women again to make an appointment for the second session and asked them to bring the PHR. If after several attempts the research assistant did not succeed in making contact with the participant by telephone or SMS, an invitation was mailed to the last known address. The interview was conducted by the research assistant. Respondents were asked about the use of the PHR and the PHR was checked for new entries. (Appendix 5) In the same period we mailed the GPs of the women a questionnaire that required minimal time to complete in order to ensure a satisfactory response. Questions concerned the use of and experience with the PHR. simultaneously focus groups were conducted by independent moderators to enable in-depth exploration of the attitudes towards the PHR and enhance an exchange of

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